No shit, Sherlock!
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| Jon Snow (Wikipedia) Now defined by his dementia diagnosis? |
Last Saturday I was tidying up PD’s cabin, preparing to row up the river in the rain, when I got a call from LBC. Would I go on a programme at 1330 to talk about Jon Snow’s Alzheimer diagnosis? I did a quick calculation: yes, I could be home in time. But what was this all about? ‘Jon Snow the broadcaster has written a book about his Alzheimer’s,' said the programme assistant. Sorry, no. I haven’t read it. I can't help you.’
That was a relief. No need to worry about hold ups on the A12 or about poor internet quality for the call. I did feel worried, however, that there was some major new book about dementia that I hadn’t even heard of.
When I had got home and changed out of my wet clothes, I had a look on Amazon. No book listed. I googled ‘Jon Snow Alzheimer’s.' Ah! Channel 4 are showing a documentary Jon Snow: the last big story on Saturday June 20th. It’s not all about his Alzheimer’s diagnosis, it’s also about uncovering a mining disaster in Zambia, though you wouldn't think that from the publicity. Snow’s announcement was also covered in a news item on Channel 4 and an interview by his friend Kirsty Lang in the Daily Mail.
As ever there is much praise for Jon’s bravery in coming out – and how sad it is that there is still such stigma that his wife, Precious Lunga, has been forced to lie for him over the two years since diagnosis. This was Jon's wish ‘In the beginning I wanted to hide it. Any sort of mental decay and you’re dead.’ It's true that it's shockingly easy to write off a person, intellectually, if they admit to having this illness.
Some years ago, I published a new edition of an explorer biography. The
author had researched his subject diligently and had undeniable expertise yet was
consistently dismissive of the point of view of his subject’s daughter - particularly if she disagreed with him. ‘You
know she’s got dementia, poor thing’. It was true that her short-term memory was poor but her
human understanding was excellent. The inclusion of her memories as a foreword brought an additional dimension and authenticity to the book. She also helped
with proof reading, both this and other Golden Duck titles, explaining that
while her reading speed had slowed dramatically with her illness, she had discovered that her
eye for a typo or misplaced comma was unaffected. She couldn’t
manage to identify a mistake ‘throughout’ but painstakingly noted it every time
– which from my editorial point of view was just as good.
Precious Lunga says that Jon suffered deep depression when he had to step down as Channel 4 news presenter. He felt useless and friendless and the effects of the illness became all too apparent. Filmed recently on the investigation of the mining disaster, however, he was bright and stimulated. He asked all the right questions and patently loved working again. When people living with dementia have the right stimulus and support to use their skills, it can feel for a while as if there’s no problem at all. People living with dementia who step up to speak at conferences sometimes say they're accused of being fraudulent as they don't fit the stereotype of the confused, forgetful victim. If you have time, do listen to former nurse Theresa Clarke speaking at the Johns Campaign conference in 2016:
https://www.youtube.com/watch?v=XbzA6WLX5f0
Jon Snow’s initial unwillingness to admit to his condition may have been exacerbated by fear. He had watched his beloved mother decline and die with Alzheimer’s. Dementia is the biggest killer in the UK and it does inspire fear. I'm 72 and I feel it every time I miss a word or experience a moment of confusion. How can one not feel terrified of something going awry in one's head? The effect of Joan Snow’s illness on her son evidently left deep distress. He’s quoted as telling an interviewer, ‘‘It is a horrible disease because she is still physically your mum. She sounds like her, but you can’t have a conversation with her.’ Let’s hope he discovered that there’s more than one way to have a conversation.
Considered rationally, however, it’s arguable that a significant amount of fear is connected to the way people living with dementia and their families are treated. Admitting a cognitive weakness hands power and agency to other people, whether they are your nearest and dearest or the institutions of the state – social services, the law, the health and care system. This is rightly terrifying. Depending on the people you love can bring feelings of guilt, as you watch them giving you their time and care. They may not always do this willingly or well. The state however can take 'best interest' decisions that may not accord with your choices at all.
We will all hope for the best for Jon
and his family. As the Channel 4 news
anchor said, ‘There’s a lot of love going their way’. Perhaps Jon will find a
new and energising purpose as a figurehead working with the Alzheimer's Society, giving courage and reassurance to
others. For the hundreds of thousands of people who are living with dementia,
but who are not National Treasures, the experience is
unacceptably varied. Dementia is a progressive and incurable. As capacities
fail, a person will necessarily become dependent on care given by others. Does this make them
less of a person? Do the people who look after them also become devalued. Too often yes -- I hope this will never happen to Jon Snow and Precious Lunga.
Last week I lost my cool at a mental health conference. I'm still feeling bad about it. Participants were debating how (or by implication whether) to involve family carers in care plans. One presentation described ten years of publicly-funded research to develop a ‘tool’ for measuring the quality of life of people with dementia living in care homes. This would then ‘inform care planning’. A laudable ambition you might think but why a ‘tool’ – why tick-boxes and questionnaires and data-collection, why ‘a systematic approach’? Why measurement?
‘Why not just shut up, watch and LISTEN?’ I felt like shouting at my laptop screen. The researchers admitted that the ‘tool’ had failed anyway because the care home staff didn’t want to use it. Ten years spent trying to approach individual human aspirations and emotions and experiences as a scientific study had failed. But who had ever thought that this method of research was a good idea?
When my turn came to speak, I felt
emotional and incoherent.‘Involving carers in care-planning’! Well of course – what a nonsense. The
person in need of care and the family members and supporters advocating on
their behalf should be writing the care plan, not treated as optional extras. I could have said all that nicely but it was the wasted brains and the wasted money and the aridity of the research approach in the earlier session that made me feel so inarticulately angry. Like Gulliver in Laputa, maybe
I am happy to report that this morning I
read a passage by a former academic dementia specialist which expressed precisely what had been making me so cross. I’ll
just type it out here. I hope it’ll make sense to you. It's an excellent book. David Reid is arguing powerfully for people living with dementia to be understood as fully human and as valuable as everyone else in society. He is clear that they, together with their family members and supporters AND the hands-on practitioners who offer professional care (don't call them care-workers) should be setting the research agendas, not funders from the academic industry.
It does make me wonder whether this kind of research actually perpetuates the separation of persons with dementia from society rather than promotes acceptance and inclusion. The sort of research noted above seems at one level to represent an ongoing and extended re-evaluation of arguments that persons with dementia are people. In my view, the academic dementia industry needs to be subject to greater scrutiny to ensure it is not simply creating work for itself. Do we really need to check, human characteristic by human characteristic, as if seeking to create and be persuaded by some vast person-shaped collage that persons with dementia remain human beings? Do you still need proof?’ David I J Reid
One of the huge benefits of a celebrity dementia
story played out in public – like Prunella Scales and Timothy West (however
curated) – is that it forces us to acknowledge that people living with dementia, and those closest to them, retain their full humanity and remain worthy of our
respect. The brief LBC item, last Saturday, focussed only on the ‘woe
is me’ aspect of Jon Snow's diagnosis. It didn’t mention the mining
community of Zambia or suggest that Snow might remain an actor in his own
life, rather than a victim. I am so glad that the forthcoming documentary will give us a chance to
watch him still plying his trade as an investigative journalist, still wearing his bright ties and socks, still asking awkward questions with charm and persistence -- whilst also
acknowledging his diagnosis and its effect on their family. I trust it will evoke admiration and
celebration, not just pity.
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